Gifted Issues Discussion homepage Forums Twice Exceptional Who is the best for testing diagnosis?

If time and resources were not an issue, who would be the best person to dx for 2e?

Does the student's type of symptoms matter the most?
Does the student's severity of symptoms matter the most?
Does the type of tester matter the most (school, ed psych, neuropsych, speech/language, etc)?
Does the experience of the tester matter the most?

You may have read my many other threads (or not). DS6 is gifted, was tested because of underachievement in global areas in K last year (mostly reading and writing), and is still struggling, though up to classmates in reading now. Testing for LD by an ed psych privately recommended to retest in one year if problems still persisted (as he was so young). I feel the writing has worsened or is stagnant despite interventions (though not OT which we will be starting soon), and reading is still a struggle though his accomplishments have improved dramatically from where we were last year.

We're only a little over the halfway mark now, but I have asked school to test for LD. They have 60 days and since he's not officially behind in reading IDK if they can refuse it. I'm not sure if writing will qualify for testing either. If they do agree to test, would that be the best way to go? I know it will be easy on our pockets, but I'd rather do "one and done" instead of multiple testing drawn out over time. Even if that means we have to pay for it or wait a few months with him so he's older and more able to be diagnosed. So if a neuropsych would be better than a school eval, we'll probably seek that route. Or do schools use neuropsych to test? Or if a speech and language specialist would be best, we'll do that.

We have insurance and there is a ?chance? they would cover neuropsych testing, but it may take time to get approved, get an appointment, etc, so I'm looking ahead to see what's best.

Thanks for any insight or recs!

Hi Displaced,

We are trading posts today!

We flailed around for a long time getting piecemeal evaluations that really just added to our confusion. Then we finally bit the bullet and did full neuropsych evaluation with a tester who specializes in gifted kids. The way we looked at it was that the other tests were money down the drain without anything to show for it. So when we decided to do the whole thing, we figured we'd better go to a gifted specialist, or else we'd just end up wondering if we could have gotten more useful information if we had. The full work-up really was expensive and for us, I really think it was worth it. Is there anybody near you who has this sort of practice?

FWIW - school testing was worse than useless for us. But I know that is very, very dependent on the school and the tester. So that's something you could start researching now, maybe?

Best of luck,
Sue

Hi Again Sue! Thanks for your post. It's helping clarify things for me. I was going to see what the school can do but now I'm thinking there may be no point in bothering except for outside evaluations for things like OT or SLP. The last thing I want to do is make DS sit through another and another test, especially if they happen to administer something that would negate him getting the correct tester to do it later on in a timely fashion. IDK because the time period is so discouraging when going through the school, and until you've waited you don't know who will do testing anyway or what they will do, etc.

Gosh, I hope they won't just give him tests now without notifying me. I did ask to be notified but I sure hope they comply!

How does one go about knowing they specialize in gifted kids? There's one affiliated with our insurance that I will try to pursue reimbursement or coverage of costs. She is the only ped neuropsych in a group of about 8 neuropsychs, so that sounds promising to me, but IDK if she specializes in gifted testing.

The school cannot conduct individual testing without parental consent. Did you already sign consent? If you did, and now want to rescind it for portions of the eval, so that your outside neuropsych can do those parts, make sure to tell them immediately, and then get it in writing to them.

FYI, the time period for school testing once you have signed consent for such is federally-mandated, and in some states, is even shorter than the federal regs. Where I am, we have 30 school days to complete the testing, and another 15 school days to hold the meeting. So roughly two months from signed permission to test.

I just sent in a letter based on a LD website asking for testing (nonspecific request), and listed symptoms DS is experiencing. He already has the gifted dx and I signed something last school year, but I think it was just permission for setting up services (they didn't test him, we submitted our private records and they just added him to the gifted program, which he is now out of altogether).

Thanks for the timeline notice. I was thinking we could get testing for LD through the school, but if we need a neuropsych to dx dysgraphia, the school would not be able to diagnose that, correct? We could still use them for SLP perhaps. Or try to get OT help with. But I didn't mention anything about SLP problems in my letter or request specific services.

The school will not Dx dysgraphia mainly because the school operates under federal IDEA law, not DSM classifications. If the school comes up with a dysgraphia-type classification, it will be "specific learning disability in reading and writing", or words to that effect. But school personnel absolutely have the training (will and clinical competence, I can't speak to) to do a comprehensive evaluation that results in need identification and service provision appropriate to dyslexia/dysgraphia.

How long ago did you send in the request letter? The school should respond to you within 10 school days (five, in some states).

If you want the school to do testing, when the permission comes, see if it has what you want on it. If not, check the box that says, "I consent, and request these additional tests," then list the additional assessments (SLP, OT). You can also refuse permission for specific listed assessments, and consent to the others. Do follow up with a phone call to explain why, though. If I receive a consent form with a little note from the parent written on it, with a phone number or email, I always contact them for more info.

Where do you seek out recommendations? The gifted program at DS's school is large but I don't personally know the students or parents except one, who had testing through the school. No 2e. And now DS isn't even getting services. Do I start e-mailing county or state gifted departments, schools, the neuropsychs, local educational psychs? Hoagies has one neuropsych for my state many hours away and I know of at least 2 nearby (if not more).

I sent in the letter about a week ago or so, so if I haven't heard from them, I'll contact the office. It's good to hear there should be a list of tests they want to do, as well as a place for me to request what I'd like. We'll see! I updated in my other thread under the reported scores that I was mistaken and the last testing privately was done in late March, much sooner than I remembered. So now I'm not certain if I should withhold more testing (except maybe OT/SLP) for a while to allow DS to age some.

Displaced,

We've had both school testing and private testing. Both school and private experiences will be different depending on your location and the experience and motivation of the testers. There are a few reasons I've personally found private testing to be more helpful than school - both are helpful, but if I had to choose one over the other, I'd choose private for these reasons:

1) With private testing there is no agenda. This is certainly not true everywhere, but in our district the staff was so overwhelmed with being able to meet the needs of students when our ds was tested that there was absolutely (at the school he was enrolled in), someone in power, somewhere, discouraging staff from showing any hint of finding a child eligible for services. That's most likely an extreme you don't have to worry about, but at the same time - the school's needs are sometimes in conflict with your students' needs. A private neurospcyh is a third-party with connection to the outcome, so you are more likely (in cases where there is a hidden agenda) to get an unbiased and full report.

2) In our experience with testing through the school you start out trying to target things you specifically see, vs with a neuropsych eval the testing starts off very broad and then narrows based on what's observed during the testing combined with info from the parent interview etc. With each of our children, we've found the real issue behind behaviors/etc was much different than what we thought going in.

3) I am not sure we could have gotten the entirely full breadth of testing from our school district that we received from our neuropsych. The parents I know who's children did get that range of testing were parents who were either in the independent evaluation stage of requesting an IEP or who were incredibly SPED-saavy and knew to ask for these specific tests (and they were given by private professionals contracting to the school). Some of these tests include the tests that our neuropsych used specifically to diagnose dysgraphia and to determine the type of dysgraphia.

4) It's wonderful that the school has a form that lists the types of testing they offer (our district has a form that probably looks the same as what you'll see - there is a section to check off for cognitive/ability and achievement testing, speech language eval, occupational therapy eval etc.) There is also a place to write in specific tests that you (parent) are requesting. The gotcha on this is - you have to know what you want to request in order to request it. If the school is on the ball and does a thorough eval it's going to be ok to not know of something to add here - the school staff will add it in as necessary - but if you are in a situation where the school isn't looking deep, doesn't particularly care if your student isn't obviously severely challenged, or is operating in a mode where they are trying to not id students for services, you may miss out on a test that is important to understanding your child's challenges simply because you are a parent, not a professional, and you don't know what tests your child will need to define his/her challenges.

5) Access to the tester (for us) was much *much* more limited in the school setting. With a neuropsych eval, we received a very detailed report and we had a one-hour follow-up interview included in the evaluation package. The interview came after we received a draft copy of the report, so we had a chance to review it first and come back with questions based on what the results were. We were (and continue to be) able to schedule additional follow-up meetings to discuss further questions (I *always* had further questions about one month after the initial follow-up meeting- it takes some time to digest everything, start to think about accommodations/remediation etc and naturally more questions bubble up to the surface). WIth school, the only access we were allowed to the psych who tested ds was within a team meeting - we tried to talk to him before the team meeting in order to save time at the team meeting with questions about his testing - but were told his schedule was too busy (and it probably was). The types and amounts of questions we were able to ask within the team meeting were limited because there were quite a few people present, there was an agenda to plow through, and time for the meeting was limited due to constraints on staff availability. We were able to follow-up with questions of the SPED staff that actually provided services, but this was not the type of access that allowed us to fully understand ds' diagnosis and needs.

6) Getting a diagnosis (as opposed to just knowing that ds qualified as SLD/written expression) was important for several reasons. The first was that it enabled us to look at what the diagnosis meant in ds' full life, not just with respect to academics. IEP goals are targeted at improving specific areas of function over a specific time range, but with a condition such as dyslexia or dysgraphia, it's not going to disappear magically when IEP goals are met or when a child graduates from high school etc - it's a part of who they are for life. Some of the goals that are great for academics leave out other goals which are important as a child moves forward in life. I can explain more of that in relation to my dysgraphic ds in a separate reply if you want more details. It was also very powerful for ds to know that he had a diagnosis of a specific syndrome in helping him recover much of the self-confidence he'd lost before diagnosis when he was sitting in class everyday watching other children write easily and wondering what was "wrong" with him (this was all internalized in a huge way). The diagnosis explained it for him in a way that I don't think *only* having the IEP/SLD could have. I'll also add that we have an extended family member who is now grown and had an IEP in elementary school for reading challenges but never had private testing or an official dyslexia diagnosis and she has wished very much, as a young adult, that she understood more about her challenges, and that she had a diagnosis. She's also hit a few brick walls academically due to not being eligible for accommodations for testing etc - yet also not being able to get testing through school once she was out of high school. Again, experiences will vary depending upon locale and school - but fwiw, having an official report with a diagnosis from a neuropsychologist, even if it's not recent, is a powerful piece of paper to have when advocating either for your child or for yourself.

7) Continued access to the same individual who did the testing. Again, your experience may vary depending upon your school district - but fwiw, the psychologists who have worked in my ds' public schools changed out every year - it was always someone different. His neuropsychologist is still in her office with the same phone #, contact info etc - so when it was time for follow-up questions or testing or touching base to update/ask about changes with time, I've been able to go back to the same professional and ask for an opinion from someone who's actually seen my ds before.

8) Developmental history - a neuropsych eval typically includes a parent interview and detailed questions about a child's developmental history since pregnancy. There can be clues within the developmental history that are significant in making the diagnosis, but our experience with school testing is that this simply isn't included because you are looking at something different - you're looking at the academic of how a student is impacted "now" vs the why in the "then". Hope that makes sense!

9) Referrals for therapies, remediation, accommodations, further testing/etc. You'll get a list of recommended therapies/remediation/etc from school testing - but only in the areas that your student qualifies for IEP services - and that's in many cases a very tough bar to fall under unless the challenge is exceptionally severe. So you may have a dyslexic child who really truly does need help with reading, but if he/she doesn't qualify for IEP services, you most likely won't get details re the type of help that will really work or who can provide it or what accommodations will be useful etc from the school. You'll get that from a good neuropsych eval, including opinions about where the best services/providers are in your area, how to work with your specific school, or other school options that might work better for your child, what to ask for when seeking accommodations etc.

10) Again, just our experience with our one school district, but when a child needs accommodations and you're meeting to discuss the accommodations, the school expects the parents to tell them what accommodations you want for your child rather than offering up suggestions for what accommodations make sense for your child from their perspective - so it's a bit like a chicken-and-egg game where you guess what would work for your child and then the school says yes if it's an accommodation they are familiar with and is easy to implement, then say no way can't do if it's something outside-the-typical. Having the list on a neuropsych report gives you knowledge before-hand re what to ask plus gives you a reasonable opinion backing up your request for the not-so-typical requests.

Please know I'm not trying to knock school testing or school personnel at all- just offering up the reasons we found private testing to be invaluable.

Displaced - in your position, with recent testing, I would consider asking for a neuropsych referral from your pediatrician, and then going in for just a parent interview, taking the test results you have so far and asking them to review, and is there anything else they'd consider testing based on what you have already and the results.

Best wishes,

polarbear

Thank you for this very comprehensive and thoughtful post. It brings up a lot of points, some I've thought and others I haven't considered before!

I'm especially interested in finding out comprehensively everything that is happening, plus all therapies that could be used to assist. Plus there is more control over the test situation and I think more comprehension about what tests will occur, and access afterwards is important as well.

Also if we consider changing schools or doing whatever we need for DS's education, an outside perspective from PS is the only one.

pb, as usual, gives a very thorough, nuanced response.

I have little to add, just that the function of the school eval is to assure equal access to a free, appropriate (not necessarily optimal), public education. The function of a private eval is whatever you want it to be, as the client.

For ds7, We've had one extensive eval (for suspected ASD), one lengthy vision eval and gifted testing, and it has been our experience that even a vision eval can be useless unless the tester understands gifties. I know you are already looking for a tester on hoagies, just wanted to say yes, it's worth the trouble!